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Monday, February 4, 2019

A Service Dog for Aidan

My boy Aidan. If you are lucky enough to be a part of his life, you are truly blessed. He is full of light and spirit. His name actually means “little fire,” and we picked that name for him when I was pregnant with him because of the constant gymnastics he kept up for 7 months. All my babies thought they were fully cooked at 6 or 7 months of pregnancy, so they decided to pop right out and not worry about their under-developed lungs, brains, immune systems, eye lashes…silly kids.

Our fiery Aidan has always felt that life is challenging. At first we didn’t recognize how hard regular life was for him. We thought he just had some quirks and would grow out of them. He didn’t. The quirks turned into full-blown challenges. Full on Special Needs. 

People often remark that they never saw Aidan’s difficulties coming. “He’s so social,” everyone says. He is social. He has always been social. He adores people and animals. But if you have lived with him and cared for him every day, like we have, you would have seen the struggles coming from the beginning.

Aidan never liked to leave the house, even as a toddler. He preferred to stay home. He had sensory issues from birth. He couldn’t sleep. He gave up naps the week he turned 2. When he was three years old and went to day care for 2 hours, twice a week, it was a nightmare. Every single day of preschool, Aidan cried when I dropped him off. He spent two years at the same preschool, with the loveliest teachers you can imagine. He loved his friends, he loved his teachers, he loved learning. But he couldn’t stand to be away from Mama. I learned to give him just a whisper of a hug at Drop Off. I would quickly kiss the top of my boy’s head and with my lips will him to be able to handle the day. I’d hand him, crying and screaming, to his wonderful teacher and I would turn the other way and shed my own tears in my mini van. 

Aidan’s separation anxiety never got better. It stayed at the same intense level even when it should have been lessening and he should have grown out of it. Aidan reacted the same way to getting on a school bus in Kindergarten, 3rd, or 6thgrade as he had when I dropped him off at preschool all those years before. With terror. So many days I had to force him on the bus. So many days I would carry my boy up the stairs of the bus, plop him next to the bus driver, who would slam the door shut as I made a quick exit, Aidan screaming the whole time. It never got better. 

But Aidan got bigger. And there comes a point when a Mama can’t lift her boy onto the bus anymore when he’s screaming and thrashing as if you were making him walk the plank to his imminent death. There comes a point where you can’t force your boy to do what he doesn’t want to, or can’t, do. There were so many moments, watching Aidan struggle in unimaginable ways, that absolutely ripped my soul from my body. I can’t even describe what the past few years have been like for him. Gut wrenching.

Then a Mama really feels helpless. And hopeless. And like she’s a total screw up because she can’t even get her kid to school like all the other Mama’s can. 

And there seems to be nowhere to turn for help. Many people – even those who are meant to help us -- do not understand the struggle of invisible disabilities because they can’t see the problem. There’s no wheelchair or physical differences. There’s no outward sign of anything being wrong. Aidan looks like a friendly, beautiful, spirited, “normal” boy. Aidan looks fine. So there must not be a problem. It must be all in Mama’s head. 

A Mama sometimes really feels helpless.

But I never give up. So even when I don’t know where we will find help, I dig until I find it. I ask friends questions, I read books, I question doctors and therapists, I search the internet when I should be sleeping, I look until I find something to try. 

We got Aidan all the help we could find. He did every therapy we thought might help him. For years. Our psychiatrist put him on medication to try and alleviate his discomfort that life thrust on him. For years, we begged his school to give him the accommodations he so desperately needed. He didn’t get the help he needed as soon as he needed it, because his disabilities are invisible. Some people don’t believe in anything they cannot see.

It took a lot of advocating to get Aidan’s needs met. We’re talking years. Years. Despite my very very best advocating efforts. Despite hiring lawyers, an advocate, a behavior specialist familiar with Tourette Syndrome. Despite everything I did, invisible disabilities – even when you have concrete evidence of their existence – can be denied by others who need to see to believe. 

It makes me sad that people can be so narrow minded that they can’t acknowledge that something can be unseen and still be very real. As Robin Williams so perfectly put it, "All it takes is a beautiful fake smile to hide an injured soul and they will never notice how broken you really are."

In 6thgrade, life got to be too much for Aidan to handle. He completely shut down. He became more anxious and depressed than I’ve ever seen him. To the point that we could not leave him alone. He physically could not go to school. I tried every single trick I had to help him cope. To help him get to school. To force him to get to school. Every morning I would put my arm around his thin shoulders and pull him along to the bus stop, where all the other middle school neighbors waited patiently for the bus, and my boy would be screaming and crying hysterically and freaking out to the point I would start crying too. 

These are pockets of memories that I try to block because they are some of the most raw and heart wrenching experiences I’ve ever had with one of my children. To see your child suffering to this extreme is just too much.

It was just too much to bear. It was too much for either of us to bear. 

The school sent their social worker to try and get Aidan to school. She came several mornings. It didn’t work. The school told me to take Aidan out early every afternoon and homeschool him for a couple classes so he could be home more. It didn’t work. Finally, the world was seeing what I had seen a decade earlier: that for some sensitive children, typical life is too much to handle. That some beautiful, sweet souls need a lot of extra help to get through “normal” life.

Aidan started going to a therapeutic day school almost exactly one year ago. These people, they’re amazing. They give Aidan what he needs. They understand him. But there are still struggles as big as mountains. The school is an hour away from our home. That’s a long commute for anyone, especially a 13 year old boy with intense anxiety. Aidan’s depression keeps him from getting out of bed some mornings. His anxiety keeps him from completing his modified school work. His agoraphobia keeps him from leaving the house. His ADHD makes focusing on his school work near impossible many days. His OCD gets in the way of completing assignments efficiently. His PANDAS and tick-borne illnesses cause his body to have tics and other symptoms that frustrate and exhaust him. It’s a daily, constant, ongoing struggle. 

Even though there is an excruciating battle going on in Aidan’s head and heart every single day, between anxiety and who he wants to be, Aidan is still full of light. His energy is more beautiful than I can put into words. All living things feel drawn to him- humans, animals, even plants. He has always made friends wherever he goes. Always. We’d show up at a playground when Aidan was a little boy, and in literally 3 minutes he’d be leading around a pack of kids he’d never met before, like Peter Pan and his Lost Boys. All of them running and laughing and following my Aidan. Aidan’s siblings chuckle because they have no idea how he can instantly connect to anyone, anytime. Despite his challenges with invisible disabilities, Aidan loves being around people and animals. He truly is “so social.” Sometimes his disabilities just get in the way of who he really wants to be.

Recently, Aidan’s therapist recommended that we look into getting him a service dog. We couldn’t believe we hadn’t thought of this before! Aidan is so attached to our two little Shih Tzus, and every animal he meets he falls in love with. When we go anywhere, Aidan asks if he can bring our puppies. But they are not service dogs. They are not allowed to come with us to restaurants, to school, on airplanes, to the ice cream shop. So Aidan refuses to go to those places most of the time. He refuses to go to his Grandma’s houses. He refuses to go to the movies. He refuses to go play at the park. Sometimes he refuses to go to school. He is shutting more and more of Life out.

I didn’t know the first thing about getting a psychiatric service dog, but I knew I would do whatever it took to figure it out, because it would be life changing for Aidan. 

I researched how to get a psychiatric service dog for anxiety and depression. Most psychiatric service dogs are only trained to help veterans with PTSD, so it is difficult to find an agency that can help a child like Aidan. I reached out to all my contacts that might have information. Aidan has some incredible angels in his life, people who still feel touched by him even though they no longer interact with him. These special people helped me locate agencies that might be able to help us. 

The first agency I applied to declined our application because they didn’t have a good fit for us at this time. I spoke with the owner at another agency in Florida- Canines 4 Hope. (canines4hope.com) She told me about their program and I told her about Aidan. She said they can definitely help us. My heart soared. The owner said once we complete the initial paperwork and send in our deposit, Aidan will come and choose the dog that he feels a connection to. He will get to name it. He will be in charge of caring for it when it comes home with us. He will sleep with the dog, eat with the dog, eventually go to school with the dog. The dog will be legally allowed to go anywhere humans go. We will travel to Florida several times for Aidan to participate in training the dog. When we bring the dog home, it will be Aidan’s best buddy.

When we told Aidan about this, he glowed. He was so full of excitement and joy, it was like sunshine washing across his whole face. 

A service dog costs between $16,000 and $40,000! Gulp! We will have to include several trips to Florida as well. Most people who need a service dog do some form of fundraising, so we decided to start a Go Fund Me page. 

https://www.gofundme.com/y4pcr-service-dog-for-aidan&rcid=r01-1549291964-ea151003a8b54028&pc=ot_co_campmgmt_w

It took a big leap of faith. We know everyone has struggles, and it is hard to ask for help because we don’t want to burden anyone else. But we also know that this dog would be the best possible tool we can give our boy to help him handle life. That is the most important thing for us. So we will do whatever it takes to accomplish that goal. 

We don’t know how this adventure will play out, but we know Aidan needs it. So we will figure it out, like we figure out everything our children need. No matter the cost or the fear or the bumps in the road, we will figure this out for our boy. We want Aidan to have a companion that will make his life feel more manageable. 

The owner of Canines 4 Hope told me stories of successful dog placements. She said that one boy got a service dog when he was just about Aidan’s age, and struggled with the same things Aidan does. This boy was able to go – independently – to college, with his service dog beside him! That brought tears to my eyes because at this point, I cannot imagine how Aidan will be able to do anything like that. Aidan can’t even go to his public middle school right now. And there is no change in sight for him. We hope he will be able to take a class at his public high school eventually, especially because they are completely amazing with special needs. But that’s a long ways away. With a service dog, I can envision Aidan being able to do anything a typical boy does. 

I am so hopeful for Aidan’s future with the idea of a service dog by his side. I can’t wait to give him this tool.  I can’t wait to see how his joy grows.

We want to truly thank all the people who are helping to make this dream a reality for Aidan. You are directly responsible for helping Aidan be able to lead a happy, satisfying life. We are so grateful for each of you.
We love you!

xoxo

Thursday, October 4, 2018

Seeds of Surrender




Whew, I had to take a minute to catch my breath, and back away from the brink of a nervous breakdown. Last winter and spring kicked my butt. Kids were in crisis, I was driving 4-6 hours every weekday to bring kids where they all needed to be because of said crises, I had to quit the best job in the world, my health suffered because of the extreme stress I was under...whew.

But I’m back! The summer gave us some reprieve from crises. The kids had some down time, some time to heal and relax. Things smoothed out. I think it was our best summer yet. Since getting IV Ozone treatment last fall, Ben and Jonah’s health has greatly improved. We haven’t had a rage in months. Rages used to happen multiple times a DAY. EVERY day. Now, it’s been months since we’ve had a full-blown rage. I live with PTSD because of all the years of rages, so I subconsciously wait for the next rage to hit, but so far so good. That in and of itself is the most monumental improvement— more than I could ever wish for or ever expected. The rages were what fueled my search to find the kids help, all those years. If you haven’t lived with rages, there’s just no way to explain the harm they do to an entire family. On a Facebook post from a fellow PANDAS parent, a mom used the words “horrific and surreal” to describe a PANDAS flare and the ensuing rages that came with it. There’s no better way to describe this illness. Horrific. Surreal. At times I can’t even believe this is my life. 

But things have a way of ebbing and flowing, waxing and waning. Light comes back to our days. We’re in a light spot right now. We still have hiccups occasionally. Flares come and go and surprise us and challenge us. But overall, everyone is doing well. 

Which makes me very uncomfortable. 

I’m used to adrenaline pumping, all day, all night. I’m used to feeling the fight or flight response many many times each day. I’m used to stress. Constant, intense, chronic stress. So when it isn’t there, I feel uncomfortable. And I try to fill that hole that stress left with something else. I try to stay ultra-busy. I go back to my part time job. I take on responsibilities I don’t need to take on. I overdo life. And then I crash. 

My body has informed me that I am not able to do all the things I used to do, without consequence. My sweet body put her foot down these past few months and said, “Nope. We’re not going to live this way.” I tried to argue with her. I tried to ignore her and convince her that I can still do it all. I can still OVERdo it all, I should say. That I can give and give and give and I really don’t need anything for myself, because life is supposed to be hard and challenging and never easy and comfortable. 

When I ignored my body because my children were in crisis, my body silently revolted. My thyroid went on strike and my Hashimoto’s flared. My Epstein Barr levels soared, all of which sent me into a tailspin of extreme fatigue. Fatigue completely freaks me out, because I get so scared that this will be the time when I won’t bounce back. This will be the time when I’m incapacitated forever. This will be the time I pushed my body too far.

My body has been giving me signals for the past decade, but either I didn’t recognize the signals, or the doctors I had at the time didn’t. A couple years ago, my gynecologist met me in her office with a long face, and said that if I wanted to have more babies, she would feel sad for me. Because my ovaries were done being ovarian. They had retired. They were on strike. “Four preemies is ENOUGH!” They said.

I went to get my hormones from Walgreens after my doctor handed me that news, and the pharmacist (who knows me so well because I pick up meds almost every single day for someone in the family) remarked that this was a new medication for me, and asked if I had any questions. I said no, no questions. I told my pharmacist friend that I had just found out that my ovaries were dead, so you know, I was going home to have an Ovarian Retirement Party with wine and ice cream. We both laughed. Because really? Really, whose ovaries just pass out at 41? Who goes into menopause at 39? Who has FOUR preemies? Who gets Lyme, Erlichia, Anaplasmosis, Hashimotos, Epstein Barr, scoliosis and more? Whose got four kids with special needs? Really, who? 

Well, this girl I guess. You just have to see the funny.

A friend recently told me I shouldn’t say my ovaries are “dead.” But my ovaries and I have a great relationship, and this is our inside joke. I am so grateful to my body for giving me my four beautiful children. I am so proud that my ovaries hung on, by some miracle, to make me a mama. I’m totally fine with being in Ovarian Retirement, and when I say my ovaries are dead, it’s a term of endearment. They know I love them. We agree that this is the craziest life, and my ovaries and I think it’s hilarious that I have gone through everything I have, and I’m still here, with the big, crazy, beautiful life I have.

Luckily now I have a team of doctors who know what to watch for when my body goes on the fritz. They know how to pull me back. I remember twice this past summer when I was struck with awe because I realized that my body felt comfortable. Two times, I didn’t have any pain anywhere. Not inside, or outside. Not in my muscles or joints or intestines or brain, not anywhere! One of these times, Alex and I were driving together and I said out loud how weird it was because at that one brief moment, my body was comfortable! That never happens when you have chronic pain. The pain-free state lasted only moments, but it was amazing and I was grateful. 

One of my soul sistas told me a few months ago that she was focusing on Surrender. I said I have a hard time with that word. She explained that she is not surrendering, as in giving up the fight and putting a stop to advocating for her family, but that she is surrendering to the place she is in life. She is not fighting what life is bringing her right now. She is trying to be ok with the way life is, even though it’s not what she expected and not what she wants in many ways. 

My soul sista is one of the wisest, most intuitive and inspirational people I know, so I knew that she was telling me something I needed to hear at that moment, even if the “why” or “how” of it didn’t make sense to me then. I made a mental note to explore Surrender.

I sat with Surrender for a few months. It kept popping back into my heart. I sat with Surrender, tasting the feeling of it in my mouth, and pulling it around my shoulders like a warm blanket. I tried Surrender on. It slowly started making sense to me. 

Recently, I had a day full of physical pain. Most of my days are full of pain, but this day was particularly intense. Fatigue and pain gripped me. Normally I don’t realize it, but I fight my body. I panic. I push against the exhaustion, I grit my teeth against the pain. I try to shove it down and do what I need to do and ignore the pain. I worry that if I recognize the pain and fatigue, I won’t be able to go on. I will have to listen to it and deal with it and I won’t be able to do all the things I want and need to do in my busy life full of beautiful kids. 

The panic crept in. I tried to push away the pain in my body. Then I heard, “surrender...”

I don’t know how to surrender, I argued. What does that even mean- surrender??

“Surrender.”

I thought Fine. I’d give it a try. So I took a deep breath. I acknowledged my pain and fatigue. I sat in the car on my way to pick up a boy from a thing and I fully felt my pain. I leaned into it and breathed. I recognized the anguish my body was in. I thought it would break me. But instead, something beautiful happened.

I was shocked. It felt like my breath wrapped around the pain, and something enveloped the entire ‘me.’ I felt like I was fully unified, totally one, perfectly together. The pain and my body were coexisting, not fighting. The pain wasn’t an entity of its own, it was just part of me that I could work within. The pain didn’t stop me from doing what I needed to do. By leaning into it, recognizing it, and surrendering to it, I was able to keep moving forward. I was able to keep picking up and dropping off kiddos at activities, walk the dogs, make dinner, yell at kids about showering...all the things I had to do. 

I surrendered and somehow it made me stronger. 

I have been pondering how we always hear what we need to, at exactly the right time. Things come into our lives at the perfect time, even if we can’t see the meaning or perfection. My soul sista planted the seed of Surrender for me months ago, and I knew I was meant to digest it a bit in order for it to make sense to me. Isn’t it wonderful that teachers are put in our paths at the perfect time?

I’m practicing Surrender. I usually forget about it and try to muscle through the pain, exhaustion, fear about rages returning, anxiety about kids’ flares...It is not natural for me to Surrender. But sometimes I remember to work on it, and when I do, I feel an ease. Not that life becomes easy, but that I am able to function with more ease, more comfort, within the challenges life throws at me.

When you feel pain, fatigue, desperation, darkness...just breathe. Lean into it. Realize that you may not be able to change it right now. As scary as it is, accept it. It won’t break you, I promise. Surrender, just for that moment. Take a deep breath and know that you can wrap yourself in Surrender and still have the strength to carry on.

XO

Tuesday, May 15, 2018

Real Live Poetry

I have been witnessing real live poetry. I have been watching my twins during the past year, and the struggles and triumphs they have been through, and it’s pure poetry.

My boys are sophomores in high school now. About to end their sophomore year, actually- how did that happen? Just yesterday they were the size of a loaf of bread, and about as heavy. Now I watch what they are capable of as amazing young men, and I am astounded at who they have become.

One boy got up on stage a few weeks ago and belted out the most incredible solo with his choir behind him. MY boy! Say what?!? I said, he doesn’t sound like that when he’s rockin’ in the shower at the top of his lungs for 45 minutes! It brought tears to my eyes to see how confident and beautiful my boy is. He tried out for 4 choirs for next school year, and made it into all four. What?!? Amazing.

My other boy has had a longer struggle this year. First our IV treatment took its toll. Anxiety grew to the point my boy could no longer get to school. So then I had TWO boys- my sophomore and my 6th grader- who couldn’t go to school due to panic. Cri.Sis. Major crisis.

My 6th grader got into a therapeutic day school about an hour south of our home. It’s been slow, but we’re making tiny progress. My sophomore got into a partial hospitalization program (PHP) an hour east of our home. Guess who has spent the past couple months DRIIIIIVVVVIIIINNNNGGG???

And yes, the middle school district will provide transportation. However, my 6th grader tried the taxi twice, and almost got into a car accident on his second trial, so now he has vowed to never get into a taxi alone again. Gr.

My sophomore spent four weeks in the PHP. Every day, practicing his exposure therapy to desensitize his brain and help him learn coping skills to deal with panic. He worked so hard. He did his homework. He faced his biggest fears every day. It was evident that he desperately wanted to get better.

Yesterday, my sophomore “stepped down” from the PHP to the Intensive Outpatient Program (IOP). It’s a half day program, so my boy can go to school for half days also. Yesterday he took a taxi from his IOP to his school, and walked through the doors for class for the first time in several months. This boy. Pure poetry. I think about how far he has come, how many obstacles he has faced in his 15 years, all with grace, dignity, and courage.

I’m in awe of my children.

When I look at my twins, I still see the little 2 lb micro-preemies they were almost 16 years ago. And I wonder how a human so tiny can survive, let alone thrive. It takes guts to make it in life, especially when you’re a kiddo who has a lot of stuff stacked against you. My babies have more courage than anyone I’ve ever met.

In two weeks my boys start Driver’s Ed. Over the past few months, I didn’t know where we would be at by the end of May. I didn’t know if anxiety would take an even worse turn and we’d be somewhere even scarier. I didn’t know if things would be back to normal. I didn’t know if the boys would be able to take Driver’s Ed when I signed them up a couple months ago, but I decided to take a leap of faith and assume things would be better by the end of this month. It was sort of my mantra. By the end of May, things will be better. By the end of May, things will be better.

And things are better. I am wary of crises, because they sneak up on you and wipe your feet out from under you without you even having a suspicion they’re behind you, and it can happen at any time. But in this one moment, right now, things are better. And I am grateful for how far my boys have come these past couple months.

Watching my boys find their path through life is like watching real live poetry: unexpected, moving, complicated, beautiful beyond description.

Tuesday, April 17, 2018

Finding Hope Through The Hard Stuff

Image result for images of blowing dandelions
I'm not one to complain, but I have to be honestsometimes I feel a little resentful about being a special needs parent. Throughout the years, I have had to learn so many new things in order to successfully parent my four sweet children who have special needs. Sometimes I’m tired of having to learn new things. It’s not that I don’t like to learn, it’s the kind of things I have to learn. Sometimes these things are not fun. I wish for my kids that they could have peace and health and ease. But often, the things our family goes through are difficult, and it's hard to watch my babies struggle.

When my kids were little, I loaded them in the van after school every day for therapies of all kinds, while my friends loaded their kids into their vans for soccer, baseball, basketball. I learned all kinds of tools while sitting in on therapy sessions. I learned about sensory diets, brushing, stretches for hip flexors that are too tight, how to deal with a child’s anxiety and not feed into it, how to build strength in cheek muscles so words can be pronounced correctly. I've had to learn how to navigate IEP's, how to hire lawyers and educational advocates, where to get the best neuropsychological exams. I've researched what types of holistic interventions will help with anxiety, ADHD, Tourette Syndrome. When I started making weighted blankets, I realized that some families have never heard of such a thing! I wished I had never had to search for ways to calm my children down, or help them sleep or focus.  

Sometimes I wish I didn’t know everything this journey has taught me. Because sometimes this journey is hard. 

In the past couple months, I’ve had a crash course in all kinds of new things. I’ve had to learn about what to do when one of my boys refused to go to school because of extreme anxiety. I’ve had to learn new ways to work with the system to get my son what he needs, which is out of the realm of “normal.” I’ve had to learn about therapeutic day schools. I’ve had to dig into anxiety even further and figure out how to help my boy adapt to a new environment. Even though the new school is a perfect fit for my son, it’s new. He doesn’t do ‘new’ well, so it’s been a journey. It feel like two steps forward, one step back, every day. But I comfort myself with the tiny little baby steps forward, because at least we’re making progress. 

Just when I think there can’t possibly be anything else drastically, devastatingly hard and new to learn, life comes up with new surprises.  

Just when I think I should be able to take a breath and be done learning about hard things, something new pops up. More anxiety, in a different kid, showing up in a different way. I’ve had to figure out what kind of documentation a school needs in order to have a child medically excused because his PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders associated with strep) is causing so much anxiety he can’t even function. Just when I’ve got one kid situated in his new therapeutic school, and I think we’ll get a break from crises, I’ve had to put my Advocating Pants right back on and go to work solving the problems of another kiddo.  

Last fall, my 15 year old twins did a 5-week course of IV treatments for their Lyme, Chronic Inflammatory Response Syndrome (CIRS, also known as mold toxicity) and PANDAS, called ozone therapy. One of my boys sailed through the treatment and has done amazing since finishing the protocol. Anxiety is reduced, there’s no more sensory overwhelm, his tics have gone. My other boy is a different story. I thought for certain that I’ve royally screwed him up by having him do the treatment, because he’s feeling SO much worse than before the treatment. It’s got to be my fault that he is suffering, living in a tortured, anxious body. I made him do the treatment and now he’s worse, while his twin brother is doing amazing after the very same treatment. As parents to special kids, how many times do we second guess ourselves? How many times do we wonder if our decisions are the right ones?

My boys did blood tests before and after the IV treatments. The results shocked me. The labs showed that the IV treatment has healed both of my sons from some very major infections that they could not get rid of no matter what treatment we tried prior to the ozone. I was dumbfounded and elated. And confused. How could the labs be so great, and my one boy be feeling so terrible? The doctor said our boy still has some infections that need to be treated. He has some things that need to be addressed, some inflammation that needs to be dealt with. And then maybe he will find the elusive healing we so desperately search for.  

But, at least I know that ozone was the right choice. On paper, my son is healing. Now we just have to get his body to a place where he feels like he is healing. I’m grateful that I can pack up my guilt about the ozone and ship it off. That treatment was the right decision. 

My boy with the anxiety started having panic attacks every day. On the bus to school. At school. At church. Anytime he was away from home. We were in crisis mode again. When we heard about partial hospitalization programs, and it was recommended that our boy attend one, I thought, “How can there be anything left in the world for a special needs kid that I don’t know about? How have I never heard of this before?” But sure enough, this was something new I needed to learn about.  

Frankly, I didn’t want to. I’m raw. I’m worn out from all the learning of all the things I don’t want to have to know. I don’t want to know about therapies and meds and special schools and special diets. I don’t want to know about all the kinds of supplements that might help anxiety. I don’t want to know about special programs for kids who can’t live life because of too much anxiety. Enough. I want someone else to do this hard stuff for me. Usually I can get through our tough spots pretty gracefully, but there are times when the days seem long, dark and lonely. On those days, I sometimes wonder-- when can I be done learning the hard stuff?

Our boy was number one on the waiting list at a top notch partial hospitalization program. We waited for three weeks for the call that would admit him. We finally got The Call, and our boy will start the program for teens with anxiety and OCD this week. He will go to this outpatient program every day for a few weeks. They will help us tweak meds, keep up with school, and learn new coping skills. I know this is what my boy needs.  

While driving my younger son the hour to his therapeutic school (because he’s too anxious to take a special school-appointed cab) I’ve had a lot of time to sit with my exhaustion and grief. I whined to myself, when will it be my turn to just have a “normal” week? I know, I know, there’s no such thing as normal. But in my funk, I fussed that my life certainly can’t be normal. 

Last week I confronted a fork in my road. I realized I could let this crazy season of life drown me and I could fall apart, or I can find a way to take care of myself and start swimmingI threw a ton of resources and self care at my worn out body and soul. A friend told me, once again, that these beautiful children were given to me for a reason. I was chosen for them. I’m not sure I’m qualified for this task I was “chosen” for, but I pulled my Advocating Pants right on up again and decided that I’ll meet the challenge as best I can, like I always do after a period of grief and exhaustion.  

Sometimes I wonder why I have to keep learning about all these things that make life so hard. I ask, “Why me?”  

Then I remember the time when I was running a support group for families whose children had Sensory Processing Disorder. Once, I met with a family who had just found out their little girl had SPD. They were scared and worried and overwhelmed. Going into the meeting, I was concerned that I wouldn’t know how to help the parents. Who was I to know how to help them?  

When I sat down with the family and they began asking questions, I had an answer for every single one. I had ideas they could try. I had advice to give. I had experiences to share. I surprised myself. I didn’t know how much I knew.  

You never know how much you know until someone needs to know what you know. Then you try to help them by brainstorming about all the things you’ve done with your own kiddos, and you realize what a wealth of knowledge you’ve accumulated. So in some ways, it is a gift to keep learning, even when the learning is hard. 

I think this is why my life path keeps me learning new things about the special needs world: so I can share what I know with other families and help them find hope. Otherwise, what’s the point? While I’m struggling through the quicksand of trying to find answers to our latest crisis, I don’t realize how much I’m learning. Once we’re through the crisis and I find myself in a position where someone asks a question about how to help their own child, I often find I have been in their shoes and can empathize. I often have some experience to share. If nothing else, I can be a safe place for others to vent, question, lament, grieve…and maybe I can help them find hope.  

Although I struggle with our family’s challenges and crises, when we’re back on solid ground I am invariably grateful for the journey we’ve taken, because it leads me to be able to help others. 

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!  
  
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